Struggling with chemo

Hello Marg06

I have just come across your post and can understand your issues. (I can't answer your post - I am from the Prostate Cancer forum) however by me replying it will "bump" it back to the top of the forum and I hope someone with the answers will reply to you.

Having read your post there are two other forums you may find helpful Chemotherapy forum and Emotional support forum .

If you click on the links I have provided when the page opens up if you click "join" on the black banner you will be able to post on both forums.

I hope the above helps, if I can do anything else for you please let me know. 

Best wishes with the rest of your journey - Brian.

Hello Brian,

Thank you for your kind response. I’ll definitely have a look at the links you sent. Hopefully someone with IBC will respond but I can see that there aren’t many members  

Best wishes to you also

Hello Marg 

I was diagnosed with IBC over 12 years ago. 
I am here. 

You should have chemo, then a mastectomy with node clearance, and then radiotherapy? What chemo are you on at the moment? be careful of dr Google as they are often wrong and outdated massively and just not helpful. 

hugs 

Hello!

Thank you so much for messaging, you’re the first person I’ve had contact with who also has IBC. And that 12 year comment was reassuring beyond words. I’m on weekly Paclitaxel and Carboplatin and 3 weekly Phesgo, had 11 weeks and 7 to go. Yes as you described surgery next then radiotherapy. The chemo has wiped me out, I’m so tired and I’ve lost loads of weight mainly because food refuses to stay in my body! And I’m scared, I’ve got small but suspicious bone inflammation and I’m not sure what that means long term. 
Any advice will be so greatly appreciated 

Hello Marg06

I have been following your conversations and although I can't help you with the answers you need a couple of suggestions are:

Ask a Nurse  the specialist MacMillan staff will be able to answer your medical questions and

You can also contact our support line on 0808 808 00 00 or e-mail contactus@macmillan.org.uk where you will find plenty of specialist support to help you with your emotions.

We are here to help, If I can do anything else for you please let me know.

Best wishes - Brian.

Hello Brian,

Yes you’re right my MacMillan nurses have been brilliant and have helped me immensely already. Unfortunately there are no answers until I finish chemo and can have another pet scan and then I guess my cancer will be given a stage. 

Hello Marg06

Many thank for the update, it's great to know you are in good hands.  I hope the rest of the Chemo set goes as well as can be expected and you have some positive news with your latest PET Scan.

If I can do anything else for you please don't hesitate to contact me - I will of course be keeping an eye on your posts to follow your progress.

Best wishes - Brian.

Thank you Brian for your support and kindness. 

Hi Marg, My best friend has just had her last chemo (Fri10th), she is having a very bad week this week, side effects etc. She has had an awful time during her chemo and after. Scans she has had allergic reactions to, where the crash teams have been called, etc. She is neutropenic so has to have all sorts extra. She has to have bonemarrow injections which make her so so poorly. But we are nearly there! She is only 35, diagnosed with the BRCA2 gene too, so before she is 40 she has to have the full hysterectomy

She is booked in for a scan on 21st then an appointment with plastics on 6th Dec, we think is a long time between appontments, but hopefully it is just precaution in case anything shows up that needs acting upon (everything crossed it is all straight forward). She really has been through tthe wringer with this treatment. She faces a double mastectomy, they dont think they can to reconstruction at the same time, but thats what the appt is for to determine the next steps. We do know she will have radiotherapy every day for 3 weeks

I hope you are managing a little better knowing you arent on your own with these side effects, even though it feels like it.

I also hope you find strength to get to the end, when it all seems so hopeless sometimes.

Stay strong, I know thats easy for me to say

x

Thanks for your response Jue6, I’ve just had my last chemo also which is such a relief. Your friend seems to have had a dreadful time, far worse than mine, and I hope she will quickly start to recover, I can’t wait to begin to feel some normality. My mastectomy is scheduled for December and like your friend at least 3 weeks of radio therapy to follow. I’ve been told I can’t have reconstruction for about 18 months after surgery, I’m thinking that’s because they don’t want anything in the way of the radiation and then my recovery needs to be monitored before reconstruction is considered. I was initially disappointed by this but I’m sure it’s for all the right reasons. Please pass on my best wishes and kind thoughts to your friend, she’s very fortunate to have such a caring friend.